About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, August 8, 2010

Hi Family and Friends!

I really, really want to share this with you - I know everyone's time is limited (mine sure is!) but I think all of you can get so much out of this entry in Shalons website! So, that you won't have to go hunt it down, I have brought it to you! Please keep her in your prayers as well - she is going through a lot and has been so inspirational to me! She's always happy to see me and very encouraging to all AVM patients! Like me, she has an amazing husband named Josh that reminds me a lot of Mark! The "warthog" is what she named this area on her face that developed from the embolizations that is dark and scabby I believe! You can always keep up w/Shalon by clicking on to her blog from my main page! She is a doll!

Surgery is scheduled to remove the coils. August 18th I go back in for an embolization with Yakes. And then on the 19th I have surgery with Dr. Hepworth, Dr. Campagna, and Dr. Cote to remove all of my inner bling. Those platinum coils that are now what you see as the “bulk,” what has caused the warthog, and which are trying to escape on their own are coming out. I still really am going to tell them I want the platinum to melt down into a keepsake bracelet. For reals! I’m thinking I’ll have a little charm made of a warthog to remember him by.

I’m super scared, absolutely nervous, but very hopeful. Trying with everything I have to focus on that last part. But it’s hard. We’ve all prepared the best we can and I know the docs are capable, cautious, and without any Superman complex. I feel good about that. But they couldn’t get any of the images they wanted to be able to prepare. They can’t “see” anything in an MRI or any other films because the coils ruin the image. So they are going in somewhat blind. But it’s necessary and they have prepared the best they can. They are confident in what they can do while absolutely aware of what they don’t want to do or don’t want to get involved with. And that’s the best we can go with.

That's the scoop! Phase 1.5 is under way. This surgery isn’t meant to be reconstructive or leave me as the Super Model that I’m anticipating ;) It is just to get the junk out and to let Dr. Yakes continue with the embolizations until he feels that he has gotten everything. When he says we are done, then I’ll go back with Hep & Cote to work on more debulking and ultimately the aesthetic part of this entire journey.

Wish me luck for next month and keep your fingers crossed that my new docs prove to be just as very awesome as I think they are!

Saturday, August 7, 2010

Hi Everyone! Wow, its finally the weekend and already I've had all sorts of adventures! Would you believe that I was @ the end of this blog and I totally wiped it out by accident? Yup! So here goes again!

First I have to say that I'm calling this O-M-G in honor of one of my fun, animal loving co-workers named Mary Jo! She's always saying OMG! The way she says it makes it funny for me every time! Her daughter has a poodle named Sammie that Mary Jo gets to take care of now and then, so she and I trade Sammie and Hanz stories and share pictures on our phones!

On Friday, Mark and I were leaving for work and gave each other a kiss goodbye, when I felt my mouth filling up with blood! It was really comming out, because I felt I had to open my mouth and just let it fall out! Told Mark to open the front door again so I could rinse my mouth out in the bathroom! Would you believe after all that, I still made it to work on time?! Then, during my time to cover the front desk for lunch, I started having another bleed! We aren't supposed to leave the front area unattended, but I knew I needed to get to the bathroom fast! I ran to my friend Diana's office first - I pointed to my mouth and opened it slightly and she goes, "OK"! She knew what was happening and by the time I got back, she already had gotten someone to cover the front desk for me! Not really happy about these things going on @ work! Now I take my toothbrush/paste to work every day in case this happens, so I won't have blood on my breath - ugh! Actually, I had been having these bleeds even before going to CO this past time and I was hoping that w/Dr. Yakes doing an embolization, that would put an end to these bleeds! Meanwhile, I have run out of the second round of steroids my Primary Care Physician put me on and I had been feeling more pain as well! Dr. Yakes always sends me home on Prednisone 20 mg., but Dr. Boynton put me on Medrol 4mg. I didn't like the latter because they gave me night sweats bad!

So, after a long day, I get home and Mark decides to make nachos for dinner! Of course those must be chased by a MARK-a-rita! I usually have a couple of dollops of the frozen concoction, but this night, I decided to have a little extra figuring, what the heck! Well, I woke up sweating and nauseous @ 5:00 a.m.! I knew I was going to need to be close to the bathroom and sure enough - had to see those nachos again! Then I caught sight of myself in the mirror and I looked horrible! I was all swollen again! My eye was almost swollen shut and the left side of my lip/face was very swollen too! It took me a while to figure out what happened! Good thing I write all my medication down! I had been off steroids completely for 2 days, so my pain was getting greater! At this point I didn't think either doctor would give me another round of steroids, so I thought I could man up and deal with it! Course my way of "dealing with it" meant taking too many pain pills!! Mmmm.....Hmmm....

I had been reading the part in Breaking Dawn where Bella is nauseous and I didn't even want to read about that! After sleeping on and off most of the today, I called up to CO and got the Physician Asst.on call, Kelly and she called me back right away! She called another round of Prednisone 20mg so I can get back on track! All I've eaten all day is a cup of applesauce! I attempted one of my favorite snacks, a glass of milk and some bread w/blackberry preserves on it! Kept that down, so I guess I'll live! Took a shower so I feel better.

So she decides to repeat the mistake she hasn't realized yet that she's made later on in the day by taking:

Oxy @3pmGaba @ 4:30pmLortab @ 7pm!

Yeah, my body is going, "I don't think you should have so many narcotics in your system little girl"! Course the Gabapentin isn't a narcotic, but I was taking the other two, too close together in time! UGH!

I should have realized this on Thursday - I had lunch w/my co-worker/friend Diana and my husband Mark. We were all talking and eating and then Mark reached out to grab my hand. My first thought was, "oh, he's being romantic and wants to hold my hand". The reality of it was, I hadn't realized that my hand was shaking! Enough so that Mark held it to stop it from shaking - yikes! That should have been my first clue to check out my meds I guess!

My buddy Felice called earlier this evening - she is such a great friend! She knew I had read Kenneth Folletts The Pillars of the Earth that is curently showing on Starz. She was watching it and says it is awesome! She is trying to tape it for me and then send it in the mail because she knows I don't have Starz! When I get done with this horrible AVM, I'm going to try and be a super good friend just like my buddies have been to me! Between Dorinda, Felice, Patty and Sylvia, I'm blessed to have fun, prayer and love all rolled into one!

Friday, August 6, 2010

Happy Friday everyone! TGIF! I was remembering when Davis was little (about 4 years old), he used to think that saying "Skunk"! was like saying a "bad word"! Well, that's what I feel like saying today after having some bleeds - SKUNK! Sigh ...

Today is also my first day without any steroids since my emboloization in Denver! I'm not a happy camper right now! Not that I ever would be a happy camper - camping and I don't get along! No steroids to keep the swelling down means more pain! Yeah, the whole left side of my head hurts! Soon as I finish this, I'm going to bed for a much needed NAP!! Actually, a lot of the swelling inside my mouth has gone down, so it's a little easier to brush! Did you know that I have to use a child size toothbrush so that it will fit into my mouth? Mmmm hmmm.... I prefer Cinderella, but I'll take Snow white if I have to, ha,ha! Yeah, what with my avm and all, my mouth has been "frozen" I guess is one way of putting it, so I'm only able to open my mouth a bit - enough to eat and brush! I need to work with the Therabite again, I haven't done that in a while, due to swelling and pain! I'm gonna wrap this up since I'm falling asleep @ the computer! Y'all have an aweswome weekend!

Thursday, August 5, 2010

Hi Everyone! How are you? Is it hot out there or what? Sometimes I wonder whether it's even worth leaving the building for lunch - you can work up a sweat just walking from the office to your car! And that's because I finally got a handicapp thingy to hang off rear view mirror! Yeah, Celia had been after me to ask my doctor for one - I haul a cart full of medical supplies and all my needs every day to and from the office, and I do have some back/knee problems, so that really does come in handy!

Anyway, I was going to write how lately, I've been having bleeds from inside my mouth! I started having them a couple of weeks before I went back to CO and had hoped that after the embolization Dr. Yakes did, that I wouldn't bleed anymore from inside my mouth! Wrong! Yesterday I was in the bathroom about to wash my face, when I decided to bend down to pick up Hanz. Right then I could tell my mouth started filling up with blood! Gosh darn it! It lasted about 5 minutes and I believe it happened again in the evening for just a bit.

Well, this morning, I sat up in bed and said, "Good morning Hanz", and right then blood just came out of my mouth and on to the top sheet! Course I went to the bathroom sink and Mark took the top sheet off the bed and put it in the wash! So that is how I started my day! Luckily, these bleeds don't last long, but I DO Ok, I need to hit the sack! More later!

Wednesday, August 4, 2010

Hi Family and Friends! How is everyone? I'm hungry, but what else is new? That's one of the drawbacks of being on steroids - always being hungry!

Oh well, this portion of my blog is about my little Hanzie! We had found out through the folks @ Petsmart that Linda, the office manager @ Santa Fe Animal Hospital has 2 Brussels Griffon puppies! I had called over there yesterday and spoke to one of the other receptionists that had answered the phone and asked whether we could bring Hanz by some time to meet the Brussels! Turns out the pups are a male and female named Griffin and Bristol! There aren't too many Brussels in Corpus Christi, so we all like knowing each other since we love the breed so much! This lady also knew Dr. Zane (my ENT here locally) has several Brussels in his family! Dr. Zane and his wife own Ellie, and I believe from the same litter, the Zanes got one of their daughters another Brussels that she named Missy and yet another female from the same litter for another daughter, but I forget the puppy's name! I guess the Zanes take their dogs to this clinic for their Veterinary care, and we already knew they take their dogs to The Dog House for grooming and supplies!

Anyway, we walk in with Hanz and right away everyone just oohed and ahhed over how handsome he is! You could hear comments like, "Oh how adorable"! "Look @ that profile"! (see photo of Hanz surrounded by women). Yesterday was Bristol's birthday and she turned one year old! See photo of Mark with Bristol! They were all just delighted @ how cute and friendly Hanz is! See photo of Bristol by herself and then Bristol and Griffin together! Bristol has a soft demeanor and she's actually somewhat of a heavy weight! I asked to hold her and she surprised me with how much she weighed - all 14 pounds of solid weight! Hanz is about 12 pounds and is light on his feet!

Here is a photo of Mark with Griffin and then a photo of me with Bristol! We had a nice time visiting and comparing stories and photos from our camera and Linda's phone! She got her pups from a breeder in San Antonio!

We had to laugh @ one point, because Linda was telling us how she doesn't cut the pups hair and that they don't like to be brushed! Oh, I was telling her how Hanz practically points to where he wants me to brush him next! Hanz likes the wire comb for getting those little tangles out! Anyway, I like to carry a "diaper bag" of sorts for Hanz when we take him out, just in case he needs anything - he's high maintenance like his mommy! Well, I was showing how I had some of Hanz's necessities in my bag, and right away, Griffin stuck his head in there like, "hmmmm...., I'm smelling something pretty good in there"! I had a couple of baggies with some of Hanz's favorite treats, along w/some bottled water, some wipes, some poop bags and his brush!

I almost forgot! There was a "little mishap" when we first arrived with Hanz. Mark had just asked whether Griffin had been fixed and right then Griffin decided to growl and snap a bit @ Hanz! Griffin's owner said it was because Griffin was jealous that Hanz wasn't fixed - yikes! They were all fine after that - no problems!

Griffin tended to be a little more timid overall, and has a bit of a "sad" expression. One of the receptionists teases him by saying, "this IS my happy face"! Awwww....! Linda and I both had to admit though, that right after seeing the movie "As Good As It Gets" we fell in love with Verdell, the Brussles Griffon in the movie! Right away seems both of us started looking into owning one of these dogs of our very own! Hanz has been all about love and happiness for us!

You should see Hanz - he knows we're talking about how special he is and he is just loving it! We just adore him and he knows it! Here he is, making sure we blog all about his play date! Well, Goodnight all! Gotta go iron, get my eardrops and then settle in to read Breaking Dawn for the 9th time!

Tuesday, August 3, 2010

Good Morning everyone!

You know, here I was ... all proud of myself for my last entry and explaining some of my goings on, and I apparently jinxed myself, because I just had a bleed from my mouth! UGH! I had already woken up about 3:30 a.m. and noticed Mark was covered up w/the sheet AND blanket. He was slightly awake and said it was cold in the house! With the steroids I'm on, I'm having night sweats, so I have the temperature set @ 73 degrees! Woke up again @ 5:30 a.m. and had missed my 4:00a.m. dose of Oxy for pain. Started eating some candy corn and decided a glass of milk and a Little Debbie chocolate roll were in order! I am still hot temperature wise, I look in the mirror and decide I look like a poodle, as my hair is very curly from the heat! After eating the Little Debbie, I have to be a moose and continue by eating a cinnamon roll and another glass of milk! I don't like being sticky, so I was eating the cinnamon roll w/a fork and accidently jabbed the inside of my mouth and it started to bleed! I could tell right away that my mouth was filling up with blood! DARN! I start rinsing my mouth out in the bathroom sink and this bleed lasts a few minutes. Poopie! This is why I can't travel right now, Mom Schuman! My mother-in-law was hoping we could come up and visit in September and I was telling her how difficult/nearly impossible it is for me to be away from home! When things like this happen ... I'm just not the best house guest right now! I need to be near my home/comfort zone to take care of these incidents! Can you imagine my telling my in-laws, "Hey, I need the aircondition on MAX because I'm hot! Plus, I need to make sure I have all the snacks I want @ my fingertips because I get so hungry w/the steroids! AND, I'd have to haul my humidifier along and have that thing plugged in and making a lot of noise! AND, I'm not going anywhere w/out my Hanzie and they don't want animals in the house! Oh well! We're a packaged deal! Mom and Vicente already figured that one out! My poor Aunt, Sister Juanita is headed to Mexico and can't take her cocker spaniel Avila with her! I would take her if I lived nearby, but my Aunt lives in Oregon! Avila is 12 years old - poor baby, she's going to miss her Mommy so much!

Mark is asleep and has no idea what happened (the mouth bleed)- it wasn't anything I couldn't handle on my own. Hanz gave up thinking I might drop a bit of cinnamon roll and went back to bed! I may have 30 minutes to close my eyes before the alarm goes off! Just had to tell you about some of the fun I was having in the wee hours of the morning!

Ciao!

Cyndi

P.S. I just want to assure everyone though, that I'm a very happy person most of the time! I have a terrific, attentive husband that loves and understands me! The cutest dog in the world that has a play date w/2 other Brussels @ the Santa Fe Animal hospital tomorrow! We were told by someone @ Petsmart, that the office manager @ the animal hospital has 2 Brussels - a boy and a girl! I called over there today and it was the girl Brussels birthday! Can't wait for my Hanzie to meet them! I believe the male dog was named Griffin! I can't remember what they told me the female dogs name was. I've decided I want a female Brussels for my 50th birthdayh in May! Woo Hoo!

Monday, August 2, 2010

Hi!

I wanted to share something with all of you. Lately, I've been running across people again, saying "What happened to your face"! Or maybe not completely understanding what I'm going through - and it's important to me to educate everyone on all things avm! Of course I'm grateful for prayer and acceptance, but there are times it might help to have a more complete picture of what is really going on! I have to say though, that I know that even though I'm going through so much - there are people going through worse. I had a lady that called to reschedule her appt. today because she said she was in a lot of pain. I could relate to that for sure! This lady said she had cancer and had already had one breast removed, then had to have the other removed, and now had to have some lymph nodes removed and was told not to be lifting things because the doctor had cut too close to a nerve, and she had been helping her mom out in the yard and now she was paying the price experiencing the pain! So I know and am grateful that @ least I have hope and will someday be avm free! I certainly don't want to whine, and believe me, I do count my blessings! What really keeps me going is my awesome support team! From family that has been there for us and has supported us with prayer, emotional and financial support that is beyond anything we expected, but appreciate so very much! Mark of course is my constant support in every way! He always assures me we are in this together and takes such wonderful care of me! From just listening to me, to changing my dressings and doing wound care and making sure my humidifier has distilled water every night! He picks up my slack around the house, since I'm not always up to doing much! On a good day I help clean the kitchen and change out Hanz's pee pad trays! Normally, my main chore around here is doing wash! Of course Hanz is Mommy's angel! Just Hanz being in our lives has brought us so much happiness - he is one special puppy! We like to say that he "rescued us"! Everyone adores him and says how well adjusted he is! Super smart and cute and we can't get enough of him! He has done wonders for my over all well being in keeping my spirits up when I could be sitting home miserable w/all I'm going through!

One of the great things that has improved is no more real spontaneous bleeds! Not like before, when I would wake up covered in blood or sometimes that would happen @ work! I would be going about my daily routine and a co-worker would tell me I was bleeding from my facial wound! It has been very minimal that I've bled lately, and when I do, it isn't gushing like it used to be! So I know that Dr. Yakes is getting those arteries closed off, so the bleeding can be stopped quickly!

Unfortunately the one thing that I just can't do anything about is the pain involved! I remember when I first started having these procedures, I didn't have to even have any pain medication prescriptions filled @ all! Then I remember asking Dr. Yakes nurse @ the time - Julie LaBadie ... "as Dr. Yakes gets closer to my face in doing these embolizations, is this going to involve some pain"? Her answer was, "Well, you may be surprised ..." - but something just told me that it wouldn't be that easy. I know a couple years ago, Mark wondered about how long I would be taking the pain pills and believe me, no one wanted to be off of them more than I did! Being on this medication put a halt to the MARK-a-ritas we love so much around here! For me anyway! At one point, I was trying to use a "pain patch", which ended up "burning" my sensitive skin, and I made the mistake of thinking I could drink a Mark-a-rita and ended up throwing up and bleeding from the force of throwing up! Lesson learned! It took a long time for me to have any tequila after that! Every once in a while Mark will put a dollop or two of some Mark-a-rita in my glass now when he makes nachos! Or maybe I can handle just ONE bud light lime w/some pizza, but usually only half a beer! I know some of y'all don't drink out there, but down here in South Texas, we enjoy our brewskies! :) Anyway ... each time Dr. Yakes works on me and does an embolization, he may use anywhere from 2cc's to 24 cc's of alcohol and that means swelling and PAIN! It got to a point where I just wasn't able to get to the level of comfort that the nurse could get me to while I was in the hospital! I had a fabulous nurse named Justin during one of the times I got stuck @ Swedish for a week w/an infection - and he was nice enough to chart my meds for me to where I could understand what and when I was taking what I needed! I also had to see a pain management doctor here that felt that I needed to take my main pain medication THREE times a day instead of only two! There is just no way around having to take the pain meds and sometimes my dose falls @ taking it @ 4:00 a.m.! Short of setting an alarm, I sometimes sleep through that time (wonder why?)so I end up taking that medication several hours late when the alarm goes off for work! So I'm already starting my day off in a bad way - grumpy because I'm in pain and having to get dressed and get my day started as I'm waiting for the pain meds to kick in! Poor Mark, I just mess his sleep schedule all up! Sometimes he sleeps through my antics, but a lot of times I wake him up as I get up to take meds or can't sleep due to being wired from the steroids I'm on! I did not go to sleep until 4:30 a.m. Saturday morning! Not to mention the steroids make me soooo hungry! I want to keep eating in bed and then I'm drooling orange candy corn on my nightgown and sheets! All this while the loud sound of the humidifier (that sounds like an air compressor) is going! Hanz finally got used to it - when I first started having to wear that mist cup on my trache, I think it scared him - he didn't know WHAT to make of the blue hose attatched to mommies neck! Doesn't bother him a bit anymore! Sometimes taking the main pain med (Oxycontin)isn't enough, so I follow it up w/a Neurontin! That used to make me SOOOO SLEEPY! I remember Dr. Yakes P.A. Rhonda would tell me that I just had to get past a certain point w/that medication, to where I wouldn't be so sleepy anymore! I kept thinking, "what does she mean by THAT"? So, I finally got to be more tolerant of that medication where I wasn't nodding off ... and if I'm still in pain several hours later (I take the Oxy every 7 hours) I may take a Lortab too! That will hold me over until it's time to take another Oxy! I may as well sign my paycheck over to the pharmacy, because there are several daily meds I need too! It's ok though, because I'm getting the help I need and I am really happy with my amazing husband and cutie patootie Hanzie!

Meeting other avm-ers has helped tremendously as well! Shalon Whitgob has been instrumental in getting fellow avm-ers to meet and help support one another! I got her name from one of Dr. Yakes P.A.'s @ the time and right away Shalon set me up w/my blog and both of us have reached many other avm-ers to help them through their procedures and situations! My blog is mainly for family and friends to keep up w/my latest procedures - and Shalon has lots of great medical information, as well as starting her own business w/her FGG's - Feel Good Gowns hospital wear! You can get to her site from mine!

Well, I'd better be off to bed soon! It's late and I still have to iron my clothes for tomorrow! I just wanted to remind all of you that even though I may not look so good right now, or I have people staring or some wonder what the heck happened to me - I like going back and filling in the gaps to some questions some may have. Feel free to ask any questions if you see me out and about. It would be nice if some people were a little more tactful, but what can you do. Would you believe a lady saw Shalon and I writing to each other on Facebook and this lady is in Israel? Her daughter has an avm, so this lady wrote and she and I have been keeping in touch ever since! I love writing and am here for anyone that has questions!

Thanks for listening and keeping up with my procedures and adventures! Take care! Love to all!